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By Judith Heumann, Special Advisor for International Disability Rights, U.S. Department of State

On the eve of December 3, the International Day of Persons with Disabilities, it is worth noting that 2011 also marks the 30th anniversary of the International Year of Persons with Disabilities. Much has happened to advance the rights, equality and inclusion of persons with disabilities since the International Year was adopted by the United Nations (UN) in 1981. International Decades of Disabled Persons have been adopted by the UN, the Asia Pacific region, the Americas and the African region, advancing activities to combat discrimination on the basis of disability. In 1990, with its adoption of the Americans with Disabilities Act (ADA), the United States became the first country in the world to adopt national civil rights legislation unequivocally banning discrimination.

For more information about the ADA and other laws that protect the rights of people with disabilities visit DisabilityLaws

The NPR Investigative Unit came to Atlanta to report on young people living in nursing facilities. Joe Shapiro interviewed young people with disabilities and their families who are eligible to receive their care through Medicaid home and community-based waiver services, but live in facilities due to a lack of funding for community services. The story features Mathew Harp, Zach Sayne, and Bylon Alexander, who the Children’s Freedom Initiative (CFI) is working with to ensure they receive appropriate services to get out and stay out of nursing facilities. CFI is supported by the Georgia Advocacy Office, the Center for Leadership in Disability at Georgia State University, the Georgia Council on Developmental Disabilities, and the Institute on Human Development and Disability at the University of Georgia.

Youth in Nursing Homes Seek Alternative Care
by Joseph Shapiro
December 9, 2010

In a hotel ballroom outside Atlanta, a young man glides his wheelchair to the front of the meeting room. With his twisted hand he hits a button on a small gray box attached to the front of the chair and a machine speaks for him.

The voice from the machine is crisp, modulated and not too mechanical. Harp has a muscle disorder and cannot speak, so he types his speech into the machine.

"I have a lot of special needs," he says, "and when I was 21 years old, I had to move into a nursing home because my mother and my sisters could not take care of me by themselves any longer."

Picture a nursing home and you think of a place for the elderly. But yearly federal nursing home data shows that there are more than 6,000 young people up to the age of 21 living in American nursing homes. And there are thousands more who are in their early 20s.

This spring, Harp gave a speech to a group of Georgia parents whose children are living in nursing facilities. It was part of the Children's Freedom Initiative, an effort by a group of Georgia disability advocates to track down every child in the state living in a nursing home and show their parents alternatives to nursing-home placement.

"I was the youngest person in the nursing home. Most of the others were very old. I had only a few friends that would come and see me. I missed everyone very much," he says. "And I wanted to leave. I wanted to live with my family so that I would not miss them so much."

After a year in the nursing home, Harp got his wish and, in March, he moved back into his mother's home. That was possible because a state and federal program paid for the aides who come to his house nine hours every day. They help him get up, get dressed and eat.

Money from another program called Money Follows the Person paid to renovate his mother's rented house to make it more accessible for Harp. It even paid for the new concrete sidewalk outside so he can maneuver his wheelchair out of the house and into his mother's van. (A few months later, he used his new ability to choose where he wanted to live and moved into the house of the woman who provides his attendant care.)

Harp's speech was followed the next day by a van tour also organized by the Children's Freedom Initiative to showcase alternatives to long-term care in a nursing home.

"Today I hope that the families will just be able to develop a vision for what's possible for their children to live a life in the community," Katie Chandler says before the tour. She works for the Georgia Advocacy Office, a disability legal group, and as part of her advocacy, helped start the Children's Freedom Initiative.

Chandler tracked down more than 80 children and young adults from Georgia who live in state hospitals and then invited some of their parents on the tour. She told the parents that even children with the most severe disabilities can get good — and even better — care outside of a nursing home.

Chandler says someone who needs 24-hour care may not actually be getting that in a nursing home; the person may be seeing an actual nurse only 15 minutes a day.

"So what you're really getting is CNA care, the certified nursing assistant," she says. "They help you with your physical needs [getting in and out of a wheelchair, bathing and eating] and that can easily be done in the community."

The van tour visited a group home, a family who cares for their son with state-paid nurses in their own home, and an adult foster home.

On the tour was 23-year-old Bylon Alexander, of Athens, Georgia. When she was 6, she suffered a stroke. Her mother cared for her at home, but got sick and was hospitalized. So at the age of 22, Alexander entered a nursing home.

The day of the funeral, aides at the nursing home got Alexander dressed, but the van that was supposed to take her never showed up and she missed her mother's funeral.

Now, she worries she's in the nursing home to stay. "I don't have anyone to take care of me. So I think I'm stuck where I'm at," she says.

Many of the 1.5 million people who live in nursing homes, however, say they do want to live in a facility. They may have disabilities so complex that the nursing home is the place they feel they get the best care. And even for people like Alexander, who want the choice to leave, it was the nursing home that provided a solution when there was no other place to go.

Also along on the tour are Sally Carter and Bobbie Davidson. They once held top positions at state institutions for people with disabilities. At first they were skeptical that the people they looked after could get good care in their own homes, but not anymore.

Now, as consultants for the state, they help people with disabilities negotiate the tricky bureaucracy of getting out of institutions and nursing homes.

Can anybody get out of an institution or a nursing home and live in a group home like the one on the tour? "Yes," Carter says, "with the right supports. Absolutely."

Davidson adds, "It's cheaper in most cases." In Georgia, it costs more to provide care at home less than 3 percent of the time, she says.

Parents on the tour mostly say their children ended up in a nursing home because they had no other choice.

For Nola Sayne it happened 13 years ago. Her son Zach, now 23, was just 10 when he had a feeding tube inserted into his stomach. His after-school program kicked him out when staff said they could not do the feedings, and no other after-school program would take him. Zach has cerebral palsy, has seizures and is partially blind.

Sayne placed a want ad in the paper and found an older woman who said she'd take Zach into her home day care. But it didn't last. After a week, the woman called her and said to come get him. Sayne found him sitting on the porch with his things.

"She was in the house. She opened up the door when I came and said, 'I'm sorry,' and she was in tears," Sayne says. "Then she slammed the door. I didn't know what to do."

Sayne thought about quitting her job as a paralegal, but she was a single mother then with two kids. She needed her salary and health insurance for Zach.

The state of Georgia would provide help only if he lived in a nursing home, so Sayne took her severely disabled son to one. Making the decision to do this, she says, "was really hard. Very, very depressing."

The closest nursing home that would take Zach was in Montgomery, Ala., a 400-mile round trip from their home. For the past 13 years, Sayne has made that drive every two or three weeks. When Zach is sick and hospitalized, she's taken off from work and stayed with him for days at a time.

"If he is sick, I'll be able to be there quickly," she says. "I won't have to worry about will I make it in time. Because with him, you know, he's had pneumonia so many times, and he could take a turn for the worse very quickly. And I've always worried about being able to get to him. I don't want him to die without me. Just to be blunt about it."

When the tour makes its way to a "host" home — a kind of adult foster care — Sayne can see a potential option. The home is run by a woman who quit her job at a hospital and gets paid to take care of four disabled girls 24 hours a day.

In October, Sayne received a disturbing letter in the mail. The Catholic order that runs her son's pediatric nursing home announced it was out of money and sold it to a private company. The new company is providing good care and has assured Sayne there is no pressure for Zach to leave.

But there's a Catch 22: Because Zach has lived in a nursing home in another state for 13 years, and because he's now an adult, he's no longer considered a citizen of Georgia. It will be hard to get him onto Georgia's Medicaid program and closer to home.

It won't be easy, either, for Alexander, who ended up in a nursing home after her mother died.

She got state approval to move out of the nursing home and into her own home, so she made it a goal to move out by her 24th birthday. That was at the end of October. She's on a long waiting list for aides and for a wheelchair-accessible apartment.

Crisis in Georgia’s state institutions Many people have read the series of articles in the Atlanta Journal Constitutions titled "A Hidden Shame: Death in Georgia's Mental Hospitals." (Click here if you would like to read the series of articles.) Like most of you, our initial reaction is to be horrified at the loss of life and at the conditions reported. Through the routine monitoring that GAO engages in, GAO advocates have an opportunity to witness many of these neglectful conditions within institutional settings. When advocates witness incidents of abuse and serious neglect we investigate the situation and step in to protect the vulnerable individual from further harm. GAO believes that the only way to prevent abuse and neglect is by involving vulnerable people in the life of the community. The highest threat that any group of people can face is to be congregated and separated away from the rest of society. Some people have concluded that the current problems with Georgia’s institutions can be fixed with more funding – more staff, larger facilities, etc. It is our belief, based on experience, that the problem of abuse in institutional settings cannot be fixed with any amount of funding. GAO recently sent a letter to key State Legislators to express our concerns about the current crisis in Georgia’s mental health system. Click here to read the letter outlining our concerns about the current crisis in Georgia’s state institutions.

GAO Objects to Settlement Ending DOJ Lawsuit

As a result of the ongoing dialogue between the Georgia Advocacy Office (GAO) and the United States Department of Justice (DOJ) regarding the unsafe conditions and practices at the State’s seven (7) Psychiatric Hospitals, the AJC "Hidden Shame" series (Click here if you would like to read the series of articles.), and complaints from other mental health advocates and concerned citizens, the United States filed a complaint against the State of Georgia. The DOJ alleged that the protections, supports, services, and treatment at the Hospitals substantially depart from generally accepted professional standards of care and applicable federal law, thereby exposing the individuals residing there to significant risk of harm, and in some cases, to actual harm and death. The DOJ and the State of Georgia reached a Settlement Agreement that would end the lawsuit.The United States found that Georgia's institutions have failed to ensure safety, failed to provide adequate treatment, have inappropriately used seclusion and restraints, failed to provide adequate medical care, failed to provide adequate services to people with special needs, and failed to provide adequate discharge planning to assure placement in the most integrated setting. Georgia confines persons of all ages with mental illness and developmental disabilities in institutions without specific standards of care or adequate supervisory, professional and direct care staff. A coalition of stakeholders, including the Georgia Advocacy Office, Cynthia Wainscott, the Carter Center, Mental Health America, Mental Health America of Georgia, Georgia Mental Health Consumer Network, Atlanta Legal Aid Society, Georgia Parent Support Network, Depression and Bipolar Support Alliance, John J. Gates, Ph.D., and Georgia Council on Substance Abuse, have asked Judge Charles A. Pannell Jr., United States District Court, Northern Division of Georgia in Atlanta, to withhold approval of the settlement.To view the full documents, GAO’s objections and expert affidavit, stakeholders' objections and Susan Jamieson's affidavit, please click on this link to the Bazelon Law Center.

Justice Department Obtains Comprehensive Agreement Regarding the State of Georgia's Mental Health and Developmental Disability System

WASHINGTON - The Justice Department today announced that it has entered into a comprehensive settlement agreement that will transform the state of Georgia’s mental health and developmental disability system and resolve a lawsuit the United States brought against the state. The lawsuit alleged unlawful segregation of individuals with mental illness and developmental disabilities in the state’s psychiatric hospitals in violation of the Americans with Disabilities Act (ADA) and the Supreme Court’s landmark decision in Olmstead v. L.C.

The U.S. District Court for the Northern District of Georgia will retain jurisdiction to enforce today’s settlement agreement, which supersedes a 2008 agreement between the state and the Office for Civil Rights of the U.S. Department of Health and Human Services (HHS) concerning Georgia’s provision of community services for individuals with mental illness and developmental disabilities. In light of today’s agreement and the progress the state has made in complying with an earlier agreement regarding the conditions in the psychiatric hospitals, the United States has agreed to withdraw its motions to enforce that earlier agreement.

More than a decade ago, in Olmstead v. L.C., the Supreme Court found that one of Georgia’s state hospitals was impermissibly segregating two individuals with disabilities in that hospital when they could have been served in more integrated settings. The Supreme Court ordered states to serve individuals with disabilities in the most integrated settings appropriate to their needs.

“The Olmstead decision strongly affirmed that people with disabilities have a right to live and receive services in the most integrated setting appropriate for them as individuals,” said Thomas E. Perez, Assistant Attorney General for Civil Rights. “Under this agreement, the state of Georgia will provide services in the community to hundreds of people with developmental disabilities and thousands of people with mental illness. The promises of the ADA and Olmstead will finally become a reality for individuals in Georgia with mental illness and developmental disabilities.”

“Georgia is the home of the Supreme Court’s Olmstead decision,” said Sally Quillian Yates, U.S. Attorney for the Northern District of Georgia. “With this agreement, the state begins to make good on Olmstead’s promise to end the inappropriate segregation of people with disabilities in state hospitals that set apart from the community.”

“The expansion of community living opportunities is critical to protecting the civil rights of individuals with disabilities under Olmstead, said Georgina Verdugo, Director of the Office for Civil Rights at HHS. “The specific requirements and timelines in this agreement will ensure that Georgians with mental illness and developmental disabilities have the services they need to live full lives in the community and achieve their goals.”

The Justice Department began its investigation in 2007, and found that preventable deaths, suicides and assaults occurred with alarming frequency in the state hospitals. In January 2009, the department entered into a settlement agreement with the state of Georgia regarding conditions in the hospitals. Further investigation found that the state also failed to serve individuals with mental illness and developmental disabilities in the most integrated setting appropriate to their needs, in violation of the ADA and the Olmstead decision. In January 2010, the department filed a freestanding complaint under the ADA and a motion for immediate relief seeking to protect individuals confined in the hospitals from continued segregation and from threats of harm to their lives, health and safety. The department subsequently entered into extensive settlement negotiations with Georgia, the Office for Civil Rights and local mental health advocates.

The agreement signed today resolves the ADA lawsuit. The agreement expands community mental health services so that Georgia can serve individuals with mental illness and developmental disabilities in the most integrated setting appropriate to those individuals’ needs. Under today’s agreement, over the next five years, Georgia will increase its assertive community treatment, intensive case management, case management, supported housing and supported employment programs to serve 9,000 individuals with mental illness in community settings. The agreement will also increase community crisis services to respond to and serve individuals in a mental health crisis without admission to a state hospital, including crisis services centers, crisis stabilization programs, mobile crisis and crisis apartments; create at least 1,000 Medicaid waivers to transition all individuals with developmental disabilities from the state hospitals to community settings; and increase crisis, respite, family and housing support services to serve individuals with developmental disabilities in community settings.

The Civil Rights Division enforces the ADA which authorizes the attorney general to investigate whether a state is serving individuals in the most integrated settings appropriate to their needs. Please visit www.justice.gov/crt <mhtml:{BAD1E866-32A2-464D-B9EF-F5AA5EFCF287}mid://00000615/!x-usc:http://www.justice.gov/crt> to learn more about the Olmstead decision, the ADA and other laws enforced by the Justice Department’s Civil Rights Division.

The agreements in this case protecting the rights of individuals with mental illness and developmental disabilities in Georgia are due to the efforts of the following Special Litigation Section attorneys: Judy Preston, Acting Chief; Mary Bohan, Deputy Chief; Timothy Mygatt, Special Counsel; Robert Koch, Max Lapertosa, Richard Farano, Aaron Fleisher, Jeffrey Murray, Jennifer Mondino, David Deutsch, Emily Gunston, Samantha Trepel, and Amin Aminfar, Trial Attorneys. In addition, the division received support and assistance from Aileen Bell-Hughes and Mina Rhee, Assistant U.S. Attorneys for the Northern District of Georgia.

REMARKS AS PREPARED FOR DELIVERY BY ASSISTANT ATTORNEY GENERAL FOR THE CIVIL RIGHTS DIVISION THOMAS E. PEREZ ON A CONFERENCE CALL REGARDING THE STATE OF GEORGIA’S MENTAL HEALTH AND DEVELOPMENTAL DISABILITY SYSTEM

Good afternoon, and thank you for joining us today. The purpose of this call is to inform you about a landmark settlement with the State of Georgia that will allow thousands of people with disabilities to receive services and support to live in their communities, rather than in institutions.

More than a decade ago, in the landmark Olmstead v. L.C. decision, the Supreme Court determined it was illegal to unnecessarily segregate in institutions people with disabilities who could appropriately receive services in community-based settings. The decision was hailed as the Brown v. Board of Education of the disability rights movement – a recognition that unnecessarily segregating people with disabilities in institutions can be just as destructive as segregating children in schools. The Court’s decision acknowledged that segregating individuals with disabilities in institutional settings deprives them of the opportunity to participate in their communities, interact with individuals who do not have disabilities and make their own day to day choices.

Unfortunately, in Georgia, where the Olmstead case originated, and in many other states, the promise of the decision has not been fully realized.

Today’s settlement will change that. It is the most comprehensive settlement that the Department has ever reached in an Olmstead case, and we will use it as a template for our enforcement efforts across the country.

The settlement was negotiated in good faith with state officials. I personally met with Governor Perdue in January of this year, and I applaud him and other state officials for their willingness to work with us to come up with solutions that would better serve individuals with disabilities and the state as a whole.

Under today’s agreement, Georgia will stop admitting individuals with developmental disabilities to its state-run hospitals by July 1, 2011, and will transition all individuals with developmental disabilities already living in the hospitals to community settings by July 1, 2015.

The state will provide support coordination services to ensure individuals will have access to the necessary medical, social, educational, transportation, housing, nutritional and other services.

In addition, also by July 1, 2015, Georgia has agreed to provide services in community settings for 9,000 individuals with mental illness who currently receive services in the state hospitals, are frequently readmitted to state hospitals, are frequently seen in emergency rooms, are chronically homeless or are being released from jails or prisons.

The agreement also requires the establishment of 24-hour crisis service centers, as well as mobile crisis teams to respond to individuals experiencing a crisis anywhere in the community.

Today’s agreement, as with all of our efforts to enforce Olmstead, is about freedom for people with disabilities. It is about fulfilling our legal and moral obligations to ensure that all individuals, regardless of their disability, can receive the services most appropriate to their needs.

It is also about economic self-interest – Georgia will save considerably when it is able to close state-run hospitals that are typically inefficient.

The average daily cost to house a person in the state hospital is at least $479, or $174,000 per year. This compares to $47,000, the average cost of providing an individual with developmental disabilities services in their home. In addition, the state has to pay for mental health services provided in an institutional setting entirely out of state funds, but is eligible for Medicaid matching funds for community mental health services.

In past decades there have been movements toward deinstitutionalization, but those movements have too often failed because of a lack of appropriate community supports.

This agreement takes into account the lessons learned in the past to ensure that as the state moves toward providing services in the community, those individuals being served will have access to all of the necessary support.

President Obama made clear his commitment to making the promise of Olmstead a reality when he announced last year the Year of Community Living. In the Civil Rights Division, as well as in our sister agencies, we are committed to carrying out this vision, and we will continue to pursue cases that ensure that promise is realized. We will continue to aggressively enforce the law, and we hope other states will follow Georgia’s example and work with us to protect the civil and constitutional rights of people with disabilities.

United States v. Georgia
Civil No. 1:10-CV-249-CAP
Settlement Agreement fact sheet
October 19, 2010
The Settlement Agreement resolves the Civil Rights Division’s complaint against the State of Georgia regarding the State’s failure to serve individuals with developmental disabilities and mental illness in the most integrated setting appropriate to those individuals’ needs. Under the Agreement:
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• Georgia will cease all admissions of individuals with developmental disabilities to their State Hospitals by July 1, 2011
• Georgia will transition all individuals with developmental disabilities in the State Hospitals from the Hospitals to community settings by July 1, 2015
• Georgia will create 1150 home and community based waivers for individuals with developmental disabilities by July 1, 2015: 750 waivers to help transition individuals from the State Hospitals to community settings, and 400 waivers to help prevent the institutionalization of those individuals currently living in the community
• Georgia will serve those individuals receiving home and community based waivers under the Agreement in their own home or their family’s home consistent with each individual’s informed choice
• Georgia will provide those individuals receiving home and community based waivers under the Agreement with support coordination to assist them in gaining access to medical, social, education, transportation, housing, nutritional, and other needed services
• Georgia will provide family supports to 2350 families of individuals with developmental disabilities by July 1, 2015, to help those families continue to care for a family member with developmental disabilities at home
• Georgia will have six mobile crisis teams by July 1, 2012, to respond to individuals with developmental disabilities experiencing a crisis anywhere in the community
• Georgia will establish 12 crisis respite homes by July 1, 2014, to provide respite services to individuals with developmental disabilities and their families
MH
• Georgia will serve in community settings by July 1, 2015, 9000 individuals with serious and persistent mental illness who currently are served in the State Hospitals, frequently readmitted to the State Hospitals, frequently seen in Emergency Rooms, chronically homeless, and/or being released from jails or prisons
• Georgia will have 22 Assertive Community Treatment (“ACT”) teams by July 1, 2013, that operate with fidelity to the Dartmouth ACT model
• Georgia will have eight Community Support Teams (“CST”) by July 1, 2014, that provide services to individuals in their own home and ensure that community resources needed for the individual to remain in the community are in place
• Georgia will have 14 Intensive Case Management teams by July 1, 2015, comprising 10 full-time case managers per team, that coordinate treatment and support services and assist individuals with accessing community resources
• Georgia will have 45 Case Management service providers by July 1, 2015, that coordinate treatment and support services and help maintain services and supports already in place
• Georgia will establish six Crisis Services Centers by July 1, 2015, to provide walk-in psychiatric and counseling services in a center that is clinically staffed 24 hours per day, 7 days per week, to receive individuals in crisis
• Georgia will establish three additional Crisis Stabilization Programs by July 1, 2014, to provide psychiatric stabilization and detoxification services in a community-based setting
• Georgia will fund 35 community-based psychiatric hospital beds in non-State community hospitals
• Georgia will operate a toll-free statewide telephone system for persons to access information about resources in the community to assist with a mental health crisis
• Georgia will have mental health mobile crisis teams to respond to individuals experiencing a crisis anywhere in the community in every county in the State by July 1, 2015
• Georgia will have 18 crisis apartments by July 1, 2015, to serve as an alternative to crisis stabilization programs and to psychiatric hospitalization
• Georgia will have the capacity by July 1, 2015, to provide supported housing to any of the 9000 individuals with serious and persistent mental illness served under the Agreement who need such support, with 50% of the supported housing units being provided in scattered-site housing where no more than 20% or two of the units,
whichever number is greater, are used to provide supported housing under this Agreement
• Georgia will provide by July 1, 2015, housing supports to 2000 individuals who are deemed ineligible for any other benefits
• Georgia will provide bridge funding to 540 individuals by July 1, 2014, to support a transition to supported housing during the time needed for those individuals to become eligible and a recipient of other supplemental income
• Georgia will provide supported employment to 550 individuals by July 1, 2015, in accordance with an evidence-based supported employment model
• Georgia will provide peer support services to individuals receiving ACT and CST services and, by July 1, 2014, to an additional 835 individuals
• Georgia will have one case manager and one transition specialist per State Hospital by July 1, 2012, to help coordinate the transition of individuals from State Hospitals to community settings
Implementation and Quality Assurance
• Georgia will begin performing by July 1, 2012, an annual network analysis to assess the availability in the community of supports and services for individuals with developmental disabilities and serious and persistent mental illness
• Georgia will institute a quality management system by July 1, 2012, to perform annual quality service reviews of the community services provided under the Agreement
• The Parties selected Elizabeth Jones to serve as an Independent Reviewer to assess the State’s compliance with the terms of the Agreement

More than 20 years after the United States Congress adopted the Americans with Disabilities Act, intending to eliminate discrimination against people with disabilities, there continues to be an outdated federal law on the books that discriminates against people with disabilities and encourages segregation, stigma, and poverty.

Sam Bagenstos is Professor of Law, University of Michigan Law School and former Principal Deputy Assistant Attorney General for Civil Rights, US Department of Justice. He is one of the foremost legal scholars regarding the Americans with Disabilities Act and the protection of peoples’ rights who have disabilities.

In the following article Professor Bagenstos eloquently describes how a 73 year old federal law - Section 14 (c) of the Fair Labor Standards Act - discriminates against people with disabilities, violates the ADA, and serves as a vehicle for unnecessarily keeping people with disabilities in prolonged segregation and out of the open labor market.

He makes a compelling argument that, “in a post ADA world, Section 14 (c) is an anomaly in the law and should be eliminated.” This change is long past due.

On June 22, 1999 the United States Supreme Court held in Olmstead v. L.C. that unjustified isolation of individuals with disabilities is properly regarded as discrimination based on disability.

The Court found that unjustified institutional segregation amounts to discrimination because it perpetuates unwarranted assumptions that people with disabilities are incapable or unworthy or participating in community life. Moreover, the Court found that confinement in an institution also severely curtails everyday life activities, such as family relations, social contacts, work, educational advancement and cultural enrichment.

All states have begun moving in the direction of providing more services in community-based settings. Georgia, however, lags begind other states in its efforts in this area. More than 5,500 Georgians with significant disabilities currently need help to either stay out of institutions or get out of institutions; some of these individuals have been waiting for more than 10 years for appropriate services. Georgia is currently 45th in national rankings in the proportion of state dollars that are allocated to funding disability services.

On May 20, 2010 the Center for Medicaid sent a letter to all State Medicaid Directors concerning a Community Living Initiative in light of the approaching 20th anniversary of the ADA and the 11th anniversary of the Olmstead decision. Please click here to read the full text of the letter.

In June of 2011 the U.S. Department of Justice, Civil Rights Division issued a Statement on Enforcement of the Integration Mandate of Title II of the ADA and the Olmstead decision. Click here to read the Statement.

General letter from Lois Curtis to those currently institutionalized or in recovery
3.15.2010

Sometimes I feel good about my life. When I feel bad about my life, I name my country, sing the gospel, and bring my mind back home.

“It’s Our Story” is a project that is designed to record the power, pride, and personal struggles of living with a disability. It's a uniquely American story and challenges our most fundamental values of freedom, autonomy, and independence.

The journey began with Justin Dart, Jr. (1930-2002), who spent much of the 1980's traveling across America collecting records of the struggles of people with disabilities. Working with hundreds of disability leaders, Mr. Dart compiled documents from all 50 states into the most comprehensive collection yet assembled of the history of the disability community. Click here to learn more about “It’s Our Story” and to contribute your own story.

July 26, 2010 marked the 20th anniversary of the signing of the Americans with Disabilities Act into law.

Washington (CNN) -- President Barack Obama commemorated Monday's 20th anniversary of the Americans with Disabilities Act by signing an executive order to increase government employment of disabled people.

"Not dependence but independence: That's what the ADA was all about," Obama said at a White House reception attended by several hundred guests, including Cabinet members, legislators and activists for the disabled.

The law, which President George H.W. Bush signed July 26, 1990, is credited with smashing barriers and creating opportunities for the disabled in a nation where more than 3 million people 15 and older use wheelchairs.

It prohibits discrimination against disabled people, guaranteeing them equal opportunity in employment, transportation, government services and other areas.

Although some critics say the act can be burdensome, costly and an overextension of the government's authority over the private sector, others say it could be stronger.

The executive order signed by Obama calls for strategic planning, mandatory training and other steps to increase federal hiring of people with disabilities.

In addition, Obama said, the Department of Justice was publishing rules to prohibit disability-based discrimination by state and local governments as well as private businesses.

He called the 1990 law "one of the most comprehensive civil rights bills in the history of this country" and cited examples of people who faced discrimination for their disabilities or overcame them.

"When told you can't, you responded with that age-old American creed, 'yes, we can,' " Obama said; applause and cheers greeted his 2008 campaign theme.

The outdoor commemoration featured a presentation in sign language by actress Marlee Matlin, who starred in the film "Children of a Lesser God," and musical performances by Nathaniel Anthony Ayers, the subject of the film "The Soloist," and Patti LaBelle.

Also Monday, Democratic Rep. James Langevin of Rhode Island, who is a quadriplegic, became the first person in a wheelchair to preside over the House of Representatives.

The Georgia Advocacy Office is investigating abuse, neglect, and deaths on a daily basis and working with people with disabilities, family members, schools, advocates, and the state to end the most harmful practices.

The National Disability Rights Network (NDRN) published a paper in January, 2009 reporting on the use of restraint and seclusion in educational settings. NDRN collected information from Protection and Advocacy organizations around the country, including the Georgia Advocacy Office. Many states have laws and regulations concerning the use of restraint and seclusion in educational settings. Georgia currently does not have any such regulations. The use of restraint and seclusion has led to psychological harm, physical harm, and even death. Click here to read the full report and to learn about the efforts of NDRN to advocate for national legislation around the use of restraint and seclusion in educational settings. If you know of a student who is experiencing restraint and seclusion and would like to discuss the individual situation, please contact our Resource Advocacy Unit by calling 404.885.1234 or 800.527.2329 (both number are voice or TTY), via email at info@thegao.org, or writing to Georgia Advocacy Office, Resource Advocacy Unit, 150 E. Ponce de Leon Ave. NE, Suite 430, Decatur, GA 30030.

July 8, 2010 was a historic day for Georgia public school students, as the State Board of Education voted unanimously to enact Rule 160-5-1-.35 which prohibits the use of seclusion, prone restraint, mechanical restraint, and chemical restraint. The Rule limits the use of physical restraint to those situations involving imminent danger. Additionally, the Rule requires schools to notify parents within one school day that their child has been restrained. Before this historic vote, schools could restrain or seclude any student, at any time, for any reason.

The Safe Schools Initiative commends the Department of Education and the State Board of Education on this inaugural action to limit these dangerous practices. However, one key safeguard is noticeably missing: there are no provisions for reporting incidents of restraint beyond informing parents. Oversight, data collection and analysis are pivotal in identifying schools that need additional support to appropriately maintain a safe educational environment. After receiving overwhelming public support for data collection, the Board decided to withhold data collection about individual districts until the federal government mandates such practice. The Board publicly announced its eventual intent to collect outcome data; but the timeline, methodology, and stakeholder access to information are all unknown.

The Safe Schools Initiative is a collaborative effort of five organizations – the Georgia Advocacy Office, the Georgia Council on Developmental Disabilities, the Center for Leadership in Disability at Georgia State University, the Institute on Human Development and Disability at the University of Georgia, and Parent to Parent of Georgia – to end the restraint and seclusion of students in Georgia schools.

For more information about the Safe Schools Initiative, please contact Jenny Holland (voice or TTY) at (404) 885-1234, (800) 537-2329 or via email at jholland@thegao.org.

PREVIOUSLY IN GEORGIA, students in public schools could be restrained and secluded for any reason, at anytime, by any employee of a school district, without telling the student’s family. On May 13, 2010, the Georgia State Board of Education initiated Rule 160-5-1-.35 “Seclusion and Restraint for All Studen ts,” which bans seclusion and greatly limits the use of restraints for all students in Georgia public schools.

A letter was sent in September of 2009 to the Office of Disability, Department of Health and Human Services; the Secretary of the Department of Health and Human Services; the Secretary of the U.S. Department of Education; the Attorney General of the United States; the U.S. Department of Justice; the House Committee on Education and Labor; the Senate Committee on Health, Education, Labor, and Pensions; Amnesty International; Human Rights Watch; and Physicians for Human Rights asking that the agencies organizations take action to put an end to the use of all inhumane and unnecessary methods of behavior modification used in some schools and residential facilities for children and adults with disabilities in the United States. Click here to read the letter and follow up correspondnce.

Georgia Senate Bill 507
In the 2008 legislative session, the Georgia General Assembly passed Senate Bill 507, a bill that is certain to impact the provision of services to Medicaid-eligible children in Georgia. Click hereto read an article that will explain the relationship between this new legislation and the Early and Periodic Screening, Diagnostic, and Testing (EPSDT) provisions of the federal Medicaid Act and a report on a Spring 2008 decision from a federal court in Georgia in a case brought to enforce these EPSDT provisions.

Click here to read a copy of the Opinion and Order entered by Judge Thrash dated February 17, 2010, granting GAO's Second Motion for a Temporary Restraining Order and Preliminary Injunction in Hunter v, Medows, Civil Action File No. 1:08-cv-2930-TWT. Hunter is a companion case to Moore v. Medows. Both cases involve EPSDT and the respective roles of the treating physician in prescribing treatment and the state’s role in reviewing the doctor’s order for treatment of children under age 21 years who are Medicaid-eligible. Both cases involve the state’s partial denial of nursing services ordered for these children by their treating physicians. The gist of the Opinion and Order is that the state may review a treating physician’s order for fraud, abuse of the Medicaid system, or whether the treatment prescribed is within the reasonable standards of medical care. “Otherwise, the state may not second guess a physician’s prescribed treatment for his patient.”

Northern District Decision: Threat of Institutionalization Sufficient for ADA Claims

In a lawsuit challenging the reduction of Medicaid funded in-home private duty skilled nursing services, a district court held on September 27, 2011 that Plaintiffs alleging that they could be forced into nursing facilities could add claims under Title II of the Americans with Disabilities Act, regardless of the fact that they are not presently institutionalized.

All of the plaintiffs are children and are in the same situation whereby Georgia’s Department of Community Health (which administers Georgia’s Medicaid program) proposes to continuously reduce the number of in-home private duty nursing hours each plaintiff receives. The Georgia Advocacy Office represents all 5 plaintiffs in this case.

In allowing the ADA claim to go forward, the court quoted another casesaying that Title II of the ADA “would be meaningless if plaintiffs were required to segregate themselves by entering an institution before they could challenge an allegedly discriminatory law or policy that threatens to force them into segregated isolation.”

Hunter ex rel. Lynah v. Cook, No. 1:08-CV-2930-TWT, 2011 WL 4500009 (N.D. Ga. Sept. 27, 2011)

The Children's Freedom Initiative - a collaboration to ensure that children live in permanent, family homes and not in institutions and nursing facilities - has a website which you can view at www.georgiacfi.org . GAO has worked on this Initiative since 2005. The site includes video from the Commissioner of the Administration on Developmental Disabilities, a historical timeline of the CFI, and resources in Georgia that can help families find services for their children to stay out of facilities.

U.S. Representatives Stearns and Bishop Introduce Fair Wages for Workers with Disabilities Act

Washington, D.C. (October 4, 2011): Congressman Cliff Stearns (R-FL) and Congressman Tim Bishop (D-NY) today introduced the Fair Wages for Workers with Disabilities Act of 2011 (H.R. 3086). The bill would phase out Section 14(c) of the Fair Labor Standards Act (FLSA), which allows employers holding special wage certificates to pay their workers with disabilities less than the federal minimum wage.

Dr. Marc Maurer, President of the National Federation of the Blind, said: “The Fair Wages for Workers with Disabilities Act is a long-overdue effort to correct an injustice written into a law meant to protect all American workers from abuse and exploitation. Workers with disabilities were excluded from the protections of the Fair Labor Standards Act because of the false belief that we cannot be as productive as Americans without disabilities. Courage and creativity are required to replace the misguided benevolence that has historically shaped policies toward people with disabilities with real opportunity for our equal employment and full participation in the workplace. We applaud Representatives Stearns and Bishop and we hope that a significant majority of their colleagues possess the courage and creativity to end over seventy years of exploitation of people with disabilities.”

“Simple fairness and decency require that workers with disabilities receive equal pay for equal work,” said Congressman Stearns. “I am asking all of my colleagues to join me in this historic effort to end wage discrimination against workers with disabilities once and for all.”

“Ensuring that Americans with disabilities receive equal pay for equal work is more than a matter of basic fairness, it’s a long-overdue acknowledgement of the value disabled Americans contribute to our workplaces every day,” said Congressman Tim Bishop. “I hope all of my colleagues will support this bipartisan effort to correct over seventy years of injustice.”

For more information about the Fair Wages for Workers with Disabilities Act and the National Federation of the Blind, please visit www.nfb.org

Chris Danielsen
Director of Public Relations
National Federation of the Blind
cdanielsen@nfb.org

Witnesses Discuss Integrated Employment For Workers With Significant Disabilities with Senate Committee on Health, Education, Labor, and Pensions

At a Sept. 15 Senate committee hearing on boosting the employment rate of people with significant disabilities, witnesses addressed barriers to employment and the need to increase opportunities for customized integrated employment.

“In the last three years, statistics show us that people with disabilities have been leaving the labor force at a rate more than 10 times the rate of the non-disabled population,” Sen. Tom Harkin (D-Iowa), chairman of the Committee on Health, Education, Labor, and Pensions, said in his opening statement.

“This is unacceptable. I might even go so far as to say I think this is gross discrimination. We need to take action to change this trend,” he said.

Harkin said he is working with Ranking Member Sen. Michael Enzi (R-Wyo.) and other committee members to use this and other hearings as part of a multiyear disability employment initiative.

“My goal is to make the policy changes necessary and engage with leaders in the business and disability communities so that the size of the disability workforce will grow from 4.9 million to 6 million by 2015,” Harkin said. He noted that the “U.S. Chamber of Commerce has also set that goal.”

“For purposes of today's discussion, I am focused on people with the most significant disabilities because they do not always benefit from traditional disability employment strategies,” he said.

Harkin offered a “working definition” of people with the “most significant disabilities” as “people for whom competitive employment has not traditionally occurred, has been interrupted or is intermittent because of the disability, or who, because of the severity of their disability, need intensive or extended support services to work competitively.”

Several witnesses discussed the need for a change in employers' attitudes regarding people with significant disabilities. “We have to think that everyone can work,” said Julie Petty, former president of Self Advocates Becoming Empowered, a national membership organization for people with disabilities.

“I don't think the spectrum should be predicated on the old notion people aren't ready to work,” said Ruby Moore, executive director of the Georgia Advocacy Office. “People are ready to work. And even in this economy, employers have unmet needs,” she added.

Katy Beh Neas, senior vice president of government relations for Easter Seals, emphasized the value of gaining job skills though summer jobs and internships. “We have to give kids the skills that they need to be successful” in the workplace, she said.

“Most of us learn what we like by giving it a shot. That needs to be true for people with disabilities,” Neas continued. “We'd really like to see some leadership from employers to help make those opportunities more available.”

There is “a huge gap between federal policies and what's actually on the ground” day to day, according to Jonathan Young, chairman of the National Council on Disability.

Although disability employment policy and laws like the Americans with Disabilities Act already are in place, they are “not aspirational,” Moore said. On the ground “we need to hold people to it.”

Most witnesses agreed that customized, integrated employment for people with significant disabilities, as opposed to segregated employment in “sheltered” workshops, should be the goal. Sheltered workshops, or “work centers,” which are typically operated as nonprofit corporations that may receive public subsidies, offer employment only to those with disabilities.

It is a very complicated issue, but “in my view having segregated work settings does not enhance the options for employment for people with disabilities. It restricts the options,” according to Fredric Schroeder, former commissioner of the Education Department's Rehabilitation Services Administration.

“And I say that because the longer society is allowed to believe that there is a place ‘over there somewhere' for ‘those people,' people with disabilities will continue to suffer misunderstanding, which leads to diminished opportunities for integrated employment,” Schroeder said. “I firmly believe in choice, but I do not believe that the majority of people who work in sheltered workshops are there out of choice.” The “basic assumption” should be that “everyone can be in integrated employment,” Harkin said. “It seems to me that we need to make that transition” from sheltered workshops to integrated employment.”

“I do believe there's a general consensus … among all disability groups that we do want to move more towards more fully integrated employment to the maximum extent possible,” while at the same time recognizing that “we can't just disrupt lives inordinately overnight” and uproot people in sheltered employment in efforts to move forward, Harkin said. “But we at least have to start with young people now and give them a new ‘cutting edge.' ”

WASHINGTON—The greatest barrier to employment for people with intellectual and psychiatric disabilities are employers’ myths and fears about their condition, not the disabilities themselves, the U.S. Equal Employment Opportunity Commission (EEOC) learned at a hearing held today. The hearing focused on a group whose rate of unemployment and underemployment far exceeds the national average.

“We want job seekers, workers, and employers to understand the requirements of the Americans with Disabilities Act and be well equipped to comply with them,” said EEOC Chair Jacqueline A. Berrien. “Today’s Commission meeting provided an important opportunity to dispel myths and learn about effective ways to dismantle barriers to employment for people with disabilities.”

Sharon Lewis, Commissioner of the Administration on Developmental Disabilities, U.S. Department of Health And Human Services, underscored the need to dismantle barriers for people with intellectual disabilities, noting that “the proportion of the population of people with disabilities who are employed is estimated to be 17 percent, compared to 63 percent for people without disabilities.”

As Ruby Moore, Executive Director of the Georgia Advocacy Office, the designated Protection and Advocacy System for People with Disabilities in Georgia, told the Commission, “one of the biggest obstacles to employment is consciously and unconsciously-held beliefs about people with psychiatric, cognitive or intellectual disabilities.” She further testified that most of the accommodations individuals with mental disabilities require can be provided in a well-managed, flexible workplace—often without any out-of-pocket costs to the employer. She stated that these flexibilities have the effect of aiding all employees, not just those with disabilities.

Chief among the misapprehensions surrounding the employment of people with psychiatric disabilities is that they are violent. In fact, psychologist Dr. Gary R. Bond of the Dartmouth Psychiatric Research Center of Dartmouth Medical School, told the Commission, “violence is exceedingly rare among people with mental illness . . . [and] being employed significantly reduces the possibility of violence even further.”

The unemployment rate for individuals with psychiatric disabilities is not only low compared to the general population, it is also half the employment rate for people with other sorts of disabilities. The lack of employment has a particular impact on individuals with psychiatric disabilities for whom work is “a crucial element in the recovery process,” according to Dr. Bond. Samuel R. Bagenstos, Principal Deputy Assistant Attorney General for Civil Rights at the U. S. Department of Justice echoed this point: “Work commands respect, and it represents agency, responsibility, and independence. Work is the place where people with and without disabilities can come together, share common projects, and break down barriers of stereotype and prejudice.”

Donna Malone, a person with a psychiatric disability, related the beneficial effect of work: “I realized that working hard was a way that I could feel good about myself and no one could take it away.” After working successfully for a number of years at Land Air Express without incident, she was discharged while hospitalized due to her disability because her supervisor had a “gut feeling” that she was a “danger” and had to “look out for the safety of his other employees.” Following a lawsuit by the EEOC alleging failure to accommodate and discriminatory termination under the Americans with Disabilities Act, the case was settled for $360,000.

Similarly, Anupa Iyer, a law student at the University of Seattle and currently interning at the EEOC, said that “work was my salvation,” after being hospitalized for a psychiatric disability. However, at her places of employment, she endured ridicule and was stigmatized, experiences which motivated her to enroll in law school.

Tenesha Abbott, who has an intellectual disability as well as learning disabilities, spoke of how her job at a local grocery store helps her “stay active and learn new things.” Through her work, she has improved her reading skills and is learning responsibility which she hopes will help her to live on her own. Her manager, Jack Eaton, related how pleased he was when employees with intellectual disabilities were able to move up to more complex jobs with greater responsibilities. He said that dealing with people’s individualized needs, as he does with employees with mental disabilities, makes him a better manager for all of his employees.

“Our witnesses brought home the fact that people with mental disabilities can work, and want to work, just like everyone else. And it’s a win-win situation when employers figure out how to tap that work potential,” said EEOC Commissioner Chai Feldblum.

The EEOC enforces the nation’s laws prohibiting employment discrimination. More information about the EEOC and the Americans with Disabilities Act can be found the EEOC’s website at www.eeoc.gov. Information about this meeting, including witness statements and a video of the event, can be found at www.eeoc.gov/eeoc/meetings/index.cfm.

In a report released on 1/18/11, the National Disability Rights Network (NDRN) found a total failure of the disability service system to provide quality work for people with disabilities. The report focuses on the problems with segregated work, sheltered environments and low wages and highlights a massive breakdown between good federal and state policies and their implementation and oversight.

It identifies the barriers to employment that people with disabilities face and dispels myths about their capability to be fully employed, equally compensated, and an integral member of American workplaces and communities. It shows a systemic failure to provide hope and opportunity to young people with disabilities who want to transition into traditional work but instead wind up trapped in a sheltered workshop.

“For decades we have worked to ensure federal laws guarantee the right of people with disabilities to live and work in their chosen communities,” said NDRN executive director Curt Decker. “Yet, our investigation found that many people with disabilities are still being segregated and financially exploited.”

The report is called Segregated and Exploited: The Failure of the Disability Service System to Provide Quality Work.

Click here to read the full report, including the portions contributed by the Georgia Advocacy Office.

Accessibility Guidelines Published on July 23, 2004. For details visit the Access Board website and read individual chapters or download the entire 161 pages.

Date: Tuesday, November 16, 2010 11:52 AM
Subject: Justice Department Makes the 2010 ADA Standards for Accessible Design Available to Online Viewers Nationwide

WASHINGTON - The Justice Department today made available online the 2010 ADA Standards for Accessible Design (2010 Standards or Standards). These standards were adopted as part of the revised regulations for Title II and Title III of the Americans with Disabilities Act of 1990 (ADA). The standards can be found at www.ada.gov/2010ADAstandards_index.htm<http://www.ada.gov/2010ADAstandards_index.htm> .

When the standards go into effect on March 15, 2012, they will set minimum requirements - both scoping and technical - for new construction and alterations of the facilities of more than 80,000 state and local governments and over seven million businesses. Until the 2012 compliance date, entities have the option to use the revised standards to plan current and future projects so that their buildings and facilities are accessible to more than 54 million Americans with disabilities.

"To protect the right of people with disabilities to participate in everyday life with family, friends, and colleagues, we must ensure access to buildings and facilities," said Thomas E. Perez, Assistant Attorney General of the Civil Rights Division. "This online version of the 2010 ADA Standards for Accessible Design will enable architects, contractors, local government service providers, small business owners, disability rights advocates, and others to find in one place the information they need to provide that accessibility. Whether they search the standards on laptops, desktops or smart phones, in offices, in the field or at home, they can find answers to their questions quickly and efficiently."

On July 26, 2010, the 20th anniversary of the ADA, President Obama announced newly revised ADA regulations. The final regulations were published in the Federal Register on Sept. 15, 2010. The 2010 Standards, which were adopted as part of the revised regulations, consist of regulatory text and the 2004 ADA Accessibility Guidelines, originally published in the Federal Register as 36 CFR part 1191, appendices B and D. To make it easier for readers to find the necessary requirements for their projects, the department assembled this online version that brings together the information in one easy-to-access location and enables viewers to search the text efficiently with their Internet browsers.

In addition to the official version of the 2010 Standards, the department has also posted on the website important guidance about the standards that is compiled from material in the Title II and Title III regulations. This guidance provides detailed information about the department's adoption of the 2010 Standards, including changes to the standards, the reasoning behind those changes, and response to public comments received on these topics.

Title II of the ADA applies to state and local government entities and protects qualified individuals with disabilities from discrimination on the basis of disability in services, programs, and activities provided by state and local government entities.

Title III prohibits discrimination on the basis of disability in the activities of places of public accommodation (businesses that are generally open to the public and that fall into one of twelve categories listed in the ADA, such as restaurants, movie theaters, schools, day care facilities, recreational facilities and doctors' offices) and requires newly constructed or altered places of public accommodation-as well as commercial facilities (privately owned, nonresidential facilities like factories, warehouses or office buildings)-to comply with the ADA Standards.

People interested in finding out more about the ADA or the 2010 ADA Standards for Accessible Design can call the toll-free ADA Information Line at 800-514-0301 (Voice) or 800-514-0383 (TTY), or access the ADA website at www.ada.gov